My husband had a massive stroke 2 1/2 yrs. ago at age 61. He never should have survived but they pulled him thru. He's paralyzed, speech is affected too. He's had one health crisis after another. Last week he had to have a kidney removed. He's been in and out of the hospital so much these last few months. He lives in a nursing home but I go to see him 2-3 times a week. When he's in the hospital I go daily. He's been telling me he wants to come home to live. I work full time and try to manage my home, laundry, mowing etc. myself. I can't afford to hire anyone. I feel like I did wrong in keeping him alive when he had he stroke. He doesn't like living this way either. I've been on anti depressants for over 2 yrs. But lately, I just can't take it any more. I feel so guilty for feeling like this. I was there every day to see him for the first year and then had to cut back. Sometimes I dread going there. I had to get him on Medicaid to help pay for the nursing home. He got SS Disability after 6 months but that goes towards his care as well as the retirement he was getting. I'm tying to survive on what I make and when I have repairs to my vehicle which was over $1100 and a emergency at home, I don't have the extra money to fix it. Twice I've had to short the payment to the nursing home because of emergencies.I had to have some limbs taken off a tree last week at home tha were cracking in the wind and going to fall on my house. That was over $700 alone. Now the nursing home is on my case for not paying them and threatening to take approprate action to collect the money. So much stress....I don't know how much more I can take. None of our friends go to visit him. Just me. Even with him in the hospital, no one has stopped by. I just want to have a life of mine own again. This last week these feelings have gotten worse.
But I do understand your stress and your anguish and your guilt. What an awful, awful situation to be dumped into. You are continuing to do your best to love and care for your husband. That is what counts. Your wish that things were different, your uncertainty whether keeping him alive after the stroke was a good thing, and even your wish for his death now do not seem unnatural to me.
With all of the focus on taking care of Husband, it is hard to take care of yourself, but it is essential. I suggest counselling for you. Ask the social worker where your husband is for resources that you can afford and that insurance covers. Your painful feelings, though natural, are overwhelming you. You deserve help. Unfortunately it doesn't look like anyone is going to come along and provide that or even suggest it, so it is one more thing to put on your already over-crowded task list. But please put it at the top -- you need some relief from this stress. Therapy can help.
I'm so sorry you don't have a support system and that your friends don't visit your husband. You will find a strong support system on this site and many people to relate to. It is a lot of stress to handle on your own.
Sending you hugs and hugs and more hugs - blessings to you and hope things get a little better. Thinking of you and keeping you in my prayers. Take care.
First thing I want to say is that you did the right thing in trying to keep him alive. Isn't that what we all do and wouldn't he have done the same for you? That's everyone's goal - to keep our loved ones with us as long as we can! Kudos to you my dear! Please stop second guessing yourself and please dump the guilt!
I'm going to simply throw this thought to you as it is the first thing that came to my mind after reading your post. Perhaps you should seek some legal advice in this situation. I know that attorney fees are high but maybe you can find Legal Aid in your area. This might free your mind to some degree and give you a little peace of mind in the financial area of your situation. When we have creditors breathing down our necks, it makes things pretty chaotic! Look into that for yourself!
As far as friends visiting, I think to some degree that's pretty normal. Many times our friends simply don't know what to say to make things better. As well, it's scary to see something like that happen to someone close to us - perhaps it could happen to us as well? Out of sight, out of mind! That doesn't let anyone off the hook for not visiting - it's just the way some people are! It's nothing personal and please don't see it that way. Sometimes we just have to be blunt and ask those close to us for what we need.
Of course your husband doesn't like living like this! Who would? I'm sure he must know how hard your life has become and he, most likely, feels guilty that he has burden you!
You haven't mentioned family as a support system - hopefully this is an option. In addition, hospitals have many good support groups available. You might check to see what's offered. No one can go through these situations alone! Please get some help.
Finally, at the risk of sounding trite, look hard for one thing in your life that you are grateful for! It may be nothing more than this website! It may be something very, very small. It's just that everyone on this earth has something good and we may have to search very hard to find it. When we do find it and focus on it, it will become more. Remember the mustard seed!
Be well my friend and I will be thinking of you.
My heart goes out to you. You and your husband have suffered so many losses and now your are just trying to salvage some kind of life of your own.
i don't know how to advise you. You've been dealt a difficult hand. If you brought your husband home, you could get in home help via medicaid and might be able to increase your income, since the nursing home costs would no longer apply. Still you would have to deal with his care on some level and hire more help than medicaid could provide in home so you can work.
Tell us more about the financial nitty gritty of the cost of nursing home. I'm so sorry for you. I can't imagine myself in your shoes. Love, Cattails.
Try to find some help among your friends and possibly your family. SOMEONE should reach out to you....a co-worker, a neighbor...a church member, someone.
Finally, I ask that you try to find peace in your heart. Your husband will die some day, and your life will change. He's only 61, so you may have to re-arrange your life to accomodate him somehow, right now. An ischemic stroke is devastating.
With hospitalizations of longer than 72 hours, Medicare coverage may kick in for up to 100 days if any progress in a program of rehabiliation can be demonstrated, and at least you are not supposed to get stuck with the hospital bills or the medication costs themselves.
Its hard, very hard, to keep doing what's best for a loved one to the best of your ability and to avoid having regrets or wondering if you could have done something different. It is only human to find yourself wishing for a way out. I know that no one just volunteers to be a sounding board for all that and to help sort through the realities of what options you really might have. An eldercare lawyer who offers low cost or free initial consultation or even an insurance expert who sells Medicare supplements might be a feasible way to get real help, if the facility social worker won't take the time to explain anything in terms of other choices. Now we are here for you on AgingCare and have maybe "been there done that" and for sure can keep you and hubby in our hearts and prayers, I hope that's "something" and we sure hope to hear more of your story, whatever you feel able to share...with some e-hugs, too...
Is your husband considered competent to make decisions? If so, you might want to do a living will for him, that he signs. You can find those forms at your state website or other places.Give one to all his doctors and if he is at a point of unlikely survival, the doctors will let you know. He will need 2 witness to sign and they can't be related. I just made one for myself and my health is fair, but it is being done so my family doesn't have to agonize at that time.
The problem is everyone says they don't want to live under certain circumstances. No one wants to be bedridden and unable to speak, etc, etc, and have a poor prognosis for recovery. Nevertheless, picking the moment to say, that's it, let him or her die, is never easy. PICKING THE MOMENT IS ALWAYS THE ISSUE. The very smartest of people, and this could even include doctors, who want in every fiber of their being to honor the wishes of a spouse of loved one who has been struck a critical blow struggle with decision. Unless the person in brain dead, it's hard to know if NOW is the time. This is especially true if someone is relatively young, like your husband was when he suffered his stroke.
First of all, it's a huge shock. Then you may wonder if he can recover enough to still enjoy life. We don't have to be perfectly healthy to be happy. And let's not forget that he is close to retirement age and you may have wondered if his early retirement would allow the both of you to live at home and the demands of his daily life would be lessened as a result. And let's not forget that you love this man and you don't want to do the wrong thing. Had he come out of this with a limp and some other minor issues, you would have felt you made the right decision. It's only in retrospect that we see the reality of another's ability to recover.
My dad suffered a significant stroke last July. We made decisions based on a number of factors, one was how hard he was trying to get better. He was so determined and it set the stage for our response. He was 88 years old then and will 90 this September. He lives with us now and is well cared for, but his quality of life is pretty slim. He can walk with a walker if we guide him and assist his balance. His speech is badly impaired and he has swallowing issues. He can feed himself, but that is the extent of his abilities. In retrospect, I wish he would have passed on when the stroke happened. Maybe he would have eventually if we had not gone ahead with the feeding tube, something that I NEVER thought I would do.
Now, my dad was 88 years old when he suffered this stroke. Your husband was 61 years old. I'm not stupid and neither are you. I respect quality of life and have no interest in keeping someone going forever. I know you felt that way too. I would not have wanted my dad to live the life he is living now and in RETROSPECT I would not have allowed it. Still, without understanding the result, I would have always questioned my decision and felt that I let him down. We both did what we felt we had to do.
It's easy to say to ourselves, "Well, let's give it a little more time. Maybe they will get better. Maybe we can turn the corner on this." At the time, this makes complete sense AND sometimes it works out. I know you were just trying to give your husband a shot at getting better and having a good life, even if it was more limited. Perfection is not required for happiness.
I hope you can let the guilt of your decision go. What's done is done and you made the best decisions you could at the time. If it would have turned out more in his favor, then you would not be upset with yourself. Let it go and forgive yourself. You have no idea how many people have struggled with the same choices you had to make. Some are happy with them and some are not. We are not God and we can't see the future. We live in the moment and do our best and that's all we can do. If it makes you feel better, let me just say, "You are forgiven, you are loved and you are worthy."
I'd like to talk a bit about your current situation. There are a couple of options as I see it. These are the things I would be thinking about in your situation....if it was me. I can only speak about how I think I might act, so please feel free to disregard anything I say here, because it is more about me than you.
If your husband lived at home with you, it's entirely possible that he would qualify for Hospice care. As long as he is in the nursing home, they will do everything they need to do to keep him going, short of disregarding the DNR order. If he is at home and your doctor's order are strictly comfort care, his life will end at some point. If you have him home with you, the both of you can discuss this in the comfort of your home and he has more options than he does in the nursing home.
This will give you the opportunity to honor his wish to come home and also honor any wishes he has after he comes home.
You said he is in Nebraska and you are in Ohio and that the Medicaid laws vary in both states. My suggestion would be to ask the Nebraska nursing home to transfer him to a Ohio nursing home. Tell them that he needs to stay on Medicaid and that you need their help to get the paper work done so he can qualify in Ohio. Do what needs to be done. You may need to pick a NH in Ohio and have their social worker help you too. I think this is doable. Once that is resolved and he is on Medicaid in Ohio, you can bring him home and make changes to his care. He will still qualify for Medicaid, but he will not be in the system of NH interference with his right to die. He will not have to undergo treatment and surgeries that are beyond his wishes and continue to be kept going for however long it can be managed.
If this was my husband, I would want to honor his wish to come home. My husband would not want to live like this either. He would want to come home, be free of the institutionalized care and make decisions for himself. I would do my best to give him that option.
So there are my thoughts. You know more about your circumstances, what you can handle and what you can't. It's just a little more food for thought. Take it for what it's worth. If any of it seems helpful then I'm glad I posted. If not, then you know best.
My heartfelt best wishes and love to you, Cattails.
Here's where I find a conflict. If my husband was in a nursing home he would not be able to say let me die. If I brought him home, I could give him that wish. I could withhold medications if he told his doc that it was his wish. I could get his doc to agree to comfort care only and not treat pneumonia or other life threatening ailments. With the help of Hospice I could keep him comfortable.
I don't know what your husband's wishes are and you haven't really stated that, just that he wants to come home.
I agree that Mursa is a concern and I don't fault you in any way for not wanting to bring him home. It's been 2 1/2 years and you are seeing things differently now. I probably would too. It makes sense that you don't want to subject yourself to an invasive illness.
A few people on this thread have talked about divorce. If that benefits you financially then it is a consideration you should review. One of the benefits I felt you would have in bringing him home was financial also. You need some legal help to decide what is best for you financially under the circumstances.
I wish you the best. You did all you could and put 150% effort into trying to get him well. My heart goes out to you. Let the past go and do what you have to do to make your life more manageable, both mentally and financially.
Again, I support your decision. It's yours to make so just know I'm behind you whatever you decide. Hugs, Cattails.